Monday, December 23, 2013

23 de Deciembre

Cuando era pequeña lo que mas esperaba era el verano. No solo para ir a tomar sol, o por que a no iba ir a clases, ni por ir a la alberca, si no la razón por la cual esperaba tanto que llegara el mes de Junio era porque siempre íbamos a Delicias. Cuando vivíamos en Oregon, el viaje a Delicias se me hacia eterno. Manejábamos aproximadamente 32 horas. Al cruzar la frontera solo quedaban 5 horas, y esas si se pasaban rápido. Tal vez porque a ese punto mis papas estaban desesperados por llegar. Pero al estar en la Colonia División del Norte calle Fco. Villa #619 todo el cansancio y desesperación del camino se nos aliviaba al instante. Mi hermano y yo corríamos a la puerta a tocarle y gritarle a mi abuelita Petra que ya llegamos. Desde la cocina nos veía y la oía decir "ya llegaron mis tesoros." En cuanto nos abría la puerta nos daba un gran abrazo tan tierno y fuerte diciendo cuanto nos estañaba. De pronto nos mandaba a la tienda de la esquina a comprar comida y siempre nos daba dinero extra para nuestras chucherías. Nos cocinaba todos nuestros platillos favoritos como alitas de pollo con arroz o carne asada con papas fritas, y siempre con ensalada de lechuga y pepino con limón y sal. Para en la tarde todos mis tíos y primos llegaban a saludarnos y empezar con sus fiestas. Era mi maravilla estar en Delicias, odiaba dormirme, se me hacia un desperdicio. Siempre lloraba cuando llegaba el día de regresar a casa pero mi abuelita nos aseguraba que nos esperaba hasta la próxima vez.

Hoy es el del aniversario en que nos dejo ese ángel, seis anos sin Ella y todavía puedo escuchar su voz, gritándole a mi mama que no me pusiera a alzar en mis vacaciones y que si a ella le toca morirse se iba morir feliz sabiendo que sus hijos ya todos tenían su vida hechas. Fue un día muy triste cuando no la robaron. La Navidad ha sido muy triste sabiendo que ya no esta y que se nos fue en fechas que se suponen son felices y de pura fiesta. Lo que me da mas tristeza todavía es que mi hijo nunca va a poder conocer a esa mujer increíble. El día que supimos sobre su diagnosis de Síndrome de Down, podía ver en los ojos de mi mama cuantas ganas tenia de llamarle y decirle y oír que le dijera mi abuelita que todo iba estar bien y nada iba a cambiar. He tratado de ser fuerte para mi mama pero a mi también me ha dolido mucho su ausencia. Quisiera que mi abuelita pudiera estar aquí para que le toque las mañanitas a mi hijo en su día como no lo hacia a todos. Quisiera que ella lo viera y que nos dijera que va hacer un gran hombre y no tenemos nada de que preocuparnos. También nos diría como le encanta oírlo reírse. Ojala y mi hijo sienta tanto amor de sus abuelitas como yo sentí. Tal vez no las tuve mucho tiempo, ni las veía todos los días, pero siempre recordare de su amor.

Mi abuelita tenia tanta sabiduría y quisiera tenerla aquí para preguntarle sobre ciertas cosas de Gio. Que pensaría ella de el y su diagnosis? Que me hubiera sugerido sobre sus atrasos? Cuando no estaba subiendo de peso, que nos hubiera dicho? Cuando no quería caminar me hubiera dicho que era normal? Ahorita que todavía no habla, que me diría? Hay veces que me dan celos porque la abuelita del papa de mi hijo si conoció a mi hijo y lo quiere tanto. Me da mucha felicidad ver sus abuelos con mi hijo, aunque mi hijo se enfada a veces con ellos, por corajudo y chiple. Ellos se preocupan porque no come bien y porque duro mucho sin crecer, y constantemente pienso en lo que diría mi abuelita. Lo que es seguro es que me lo esta cuidando desde el cielo igual que a todos sus seres queridos. Le pido a Dios que me ayude a ser un décimo de la mujer y madre que era ella. Seis años sin ver su sonrisa ha sido difícil, pero algún día nos veremos de nuevo. Ojala y visite a mi hijo en sus sueños como lo a hecho con mi hermana. Tal vez nunca probaran su comida ni sentirán sus abrazos pero si sentirán su amor y la conocerán por medio de nosotros que nos toco conocer a esa gran mujer.

Descanse en paz Petra Gutiérrez de González
06/29/1944 - 12/23/07

Wednesday, December 18, 2013

Challenges in Communicating

Gio is three years old. He turned three in October. It is a little obvious that with the Down Syndrome there will be several things that are not "normal" and he will be delayed. As I have mentioned before, Gio doesn't have a very large vocabulary. He doesn't hold a conversation. When communicating with him it's still a lot of yes or no questions, or asking him to point to what he needs. He was signing a lot while he was receiving speech therapy, but that had to stop because he turned 3 and he was suppose to start school in January, but I have decided against it and have him wait until the fall. I was told he can be referred to a speech therapist while we wait for him to start school so I will be looking into that. It's a bit upsetting to see him regress. For a while he was counting everything and very clearly and he signed "please" and "more" and "milk" and saying "teta" (bottle). Now I can barely get him to count to three on his own and he refuses to sign. Part of it is my fault because I take advantage of his progressions. I forget that I have to constantly repeat things to him or he forgets it. When I count to him to ten he will just say "uno" or "dos" over. I did, however, get him to say "agua" (water) yesterday, and that means he is going to take a bath.

I helped a lot with my sister when she was born and as she grew. I took for granted how quickly she picked up on things and how she would remember everything, as long as she was shown once. I mentally compare her and Gio all the time. How old she was when she started walking, how much she talked when she was three, how independent she was when she was four. My sister was three while I was pregnant and she asked millions of questions. Her curiosity was annoying, but now I get jealous. I'm so mad that I didn't enjoy and take the time to answer her questions and listen to what she had to say and just admire her knowledge at such a young age. While I was pregnant, she asked me "how did a baby get inside your tummy?" I laughed and told her I ate it. She told a friend's little cousin that the baby was a little seed that was running, running and that I wanted a baby so I caught it and ate it. They were both so shocked that I ate babies. It was hilarious. Her imagination at that age was icnredible and still is to this day. She is extremely smart and creative. This is what I expected my son to be at the age of three.

When I express myself to people, most of the time the responses are "but he IS smart, he learns so quickly," "he will talk don't worry," "he knows how to talk he's just lazy," "he's just babied too much," "a lot of three year olds don't talk." All of these I know come with good intentions, but sometimes I just wish someone would tell me that it's ok that he doesn't talk, but for them to acknowledge he has Down Syndrome. I wish instead of making excuses someone would help me find a way to help him. I do get lazy A LOT, but because I'm in so much denial still. I keep thinking it'll go away and tomorrow he will be asking me why his dad always falls asleep on the couch, or why Mater is so good at wrestling, or how far away the moon is because Mater got there really fast, or why Jack can't be Santa Claus why does he have to be the Pumpkin King. I want him to tell me to tell Santa Claus that he wants a Chuck dumptruck for Christmas. I want him to ask me to make him chicken with rice for dinner or to change the T.V. to the bubble guppies. He IS smart and he IS amazing. I wish I knew what he was thinking. Sometimes I catch him staring blankly as though he was lost in some very interesting thought. He laughs at random things in certain movies he's seen over and over and I want to ask him what he found so funny this time that he didn't see last time. I am so excited for the day he will communicate freely with me. I daydream about conversations we will have in the future and how he will respond and things we will laugh at together. The places he'll ask me to take him to. Until then, I'll pretend we have these conversations and continue to push him to communicate with him even when he's frustrated and annoyed that we pressure him.

It blows my mind how much we take advatange of on a day to day basis. You expect for your kids to be "normal" that when life throws you those curveballs it's a pain that won't go away. It isn't even self-pity, as most people would assume. It's a pain of knowing you're child won't experience things a certain way and since we live life that particular way. Everyone keeps asking what I want for Christmas and what I'm going to give Gio for Christmas. Of course I'm going to get him actual presents that he can open, but the one thing I'm going to give him is my patience and love and my presence. I won't ever let him feel alone even if it means I stand next to him for 24 hours straight so he allows me to get a break. I think the reason I can't decide what I want is because I don't need anything. I'm truly blessed, all I want for Christmas is his happiness. As cheesy as it sounds it's real, I want a whole lifetime with him. Forever; and if he never learns to really talk I will sign with him til my hands fall off. Whatever it takes.

Merry Christmas to everyone! (:

Thursday, October 10, 2013

October is Down Syndrome Awareness month (:

October is an awareness month for a lot of things such as breast cancer, domestic violence, and the one that hits home for me, Down Syndrome. If my son didn't have Down Syndrome this might just be one of those things that you think about for a moment then brush it off because it has nothing to do with you or anyone around you. That's how we all are, though and so when people don't care as much about this as I do, it doesn't really bother me as much as it first did.

I do want to talk about it so that maybe it sparks something in someone else, just like with breast cancer. A lot of football players in the NFL wear pink to represent someone they love who has or has had to deal with breast cancer, but why doesn't anyone wear blue or yellow? It's hard for me to believe that NO ONE in the NFL has had to deal with someone they love having a disability and from some research I've done Down Syndrome is pretty common. Maybe one day people will have spoken up enough to have something represented for those who don't know others see them as "different."

For the past few months my biggest stress has been trying to decide whether or not to put Gio in school. I didn't think he was ready for a "real" preschool classroom with 20 or so kids and 1 or 2 teachers. He wasn't at the level, I felt. So his coordinator at Child Find did an evaluation so my son actually is eligible for special education classes. It sort of breaks my heart for my son only because I know how mean people can be about special education. Anyways, I went and visited the school and it was perfect! There's 6 or 7 kids with 4 teachers. The kids are all pretty much at Gio's level and they get speech therapy and occupational therapy twice a week and a social worker visits once a week to make sure everything is going good. They also get 15 minutes of integrated learning meaning he will get to be in the "regular" preschool classroom to see how he does there. It is a 3 hours a day/5 days a week program. My only concern is that I wouldn't have anyone to take him or pick him up, so they offered for the bus to do that for me. Someone will be there to buckle him up and help him down when he gets to school. This is what I am looking forward to for next fall and I'm VERY excited for Gio to go to school. I know it will be very good for him. The teachers and other staff seem very loving and concerned about the kids which made me love that school so much more. It made me feel better that my son will get the individual attention he needs.

I now have a new worry, though. I recently read a story about an 11 year old boy in Florida who has Down Syndrome and had a bad incident at his school. He is adopted by his grandparents after his parents couldn't care for him. He goes to a school specifically for children with disabilities, so his grandparents thought they had made the right decision since the staff their should have been trained to deal with these childrens' different needs. It seems as though the little boy throws himself on the ground when he is upset or frustrated and a few weeks ago the principal was called to his classroom to help him. The principal couldn't get him to get up, so she dragged him, yes DRAGGED HIM. Police reports show that the boy was dragged a little under 30 feet and unfortunately some of that was concrete and over two door thresholds.

When his grandpa picked him up he was in total shock (I personally would have gone off on everyone right then and there!) He saw the bruises and scratches on his grandson's arms and found that his rib cage was severely bruised. He reported the principal to the police despite the emails and cards the principal has sent apologizing to the family. She claims that the child didn't seem distressed at the moment and the injuries were unfortunate (NO SHIT). Reading this article really infuriates me because this principal is suppose to be the leader and example of the other staff as to how to care for the children in her school. It worries me that people are so ignorant at times. Would she have dragged a "normal" kid at a "normal" school? The grandparents have moved the boy to another school.

It's sad that educators and even authorities have no knowledge on how to act in certain situations, just like with Robert Ethan Saylor. He passed away because of the lack of training most police officers have in situations where they have to handle a person with a disability. It is so unfortunate how people feel like if they don't know someone with a disability they don't need to know even the basics about it. This worries me with my son because I was so excited to put him in school, but there will always be risks and the majority are risks we have to take. The best that I can do as a parent is educate those around my son and make sure that I'm always around to see what's going on. I can only ask that anyone who knows about these things help educate others as well, awareness is the key.

Tuesday, September 17, 2013

To start school or not to start?

Since May, my son's speech therapist and service coordinator have been telling me about preschool. After he turns 3, Gio can no longer receive services from Child Find, unless he goes to preschool. I found out, however, that he can receive speech therapy through Medicaid. When I found that out I was a little relieved because as his third birthday gets closer I just don't see Gio ready for school. Preschool is not like daycare. It is a very set routine and takes a lot of discipline. It's probably my fault, but my son is not very disciplined. I know preschool would be so good for him especially right now that he's so eager to learn, but because I lacked the need to really discipline him and teach him how to behave in a way that he would be prepared for school I'm leaning towards waiting a year before sending him off into the world of education. He has the mentality of maybe an 18 month old and I don't know many mothers who would send their 18 month olds to preschool. However, I have realized that I have not been pushing him as much as I should. It isn't because he is "special needs" or because I feel like he isn't capable because he is VERY capable and VERY smart. He is amazing at learning things visually. Anything you show him he will imitate and have down in a matter of minutes. He is the sweetest so I know I'm afraid that he wouldn't defend himself if another kid were to be mean to him. He is so eager to please and loves sharing. He of course has his moments where he would rather play alone, but that comes with being an only child. I haven't necessarily neglected his learning I feel I have just tried to enjoy him as my baby. He may be a little behind, but like a friend reminded me, I am also here to push him to his limit and beyond so that he succeeds in all he does and doesn't use his own disability as an excuse for anything. I have determined myself to teach my son and catch him up within the next year. So that come next fall, when all the kids are preparing for school, he will be a part of that. He will be excited for school and to play with the kids and excited for all that he will learn. He is so clueless right now, which is what I think hurts me the most about trying to put him in now. His dad and I have both decided we can't baby him anymore and we need to push him. We have decided to teach him ourselves along with help from the therapists provided to us by Medicaid to prepare our son for preschool. It may not seem like a big deal to some, but it is a HUGE deal for us. Most parents don't even consider putting their kids in preschool or do it because they are too old for daycare. This is so much more for us than that. At first, his dad was mad at me for even considering preschool because he wasn't raised that way. Now that he has seen how much it will help Gio he is as determined as me to get our son ready for next year. This is the beginning to our son's education. I've been lazy and I've been slacking, not realizing that the one truly being affected was my son. How can he succeed if we do not expect him to reach for the stars? If we allow him to settle for average? I'm still learning and making mistakes, unfortunately, is how we learn most of the time. Gio has taught me so much, I meed to return the favor and teach him all he needs to know. We're growing up together. 

Wednesday, September 11, 2013

Gio First.

This story is from my mom's point of view. I wanted to share other peoples' perspectives on what is going on with my son because I am not the only one affected by it, or that cares and loves him, but obviously no one loves him as much as I do (;
I will be inputting stories from other people once in a while and getting their view on different situations or on certain milestones my son has met. This won't be the only time I do this. I think it is necessary to bring in other opinions and share how the people who love my son feel, as long as they are willing to share. I am VERY fortunate that I have a ton of support and my son has love all around him.

Unique, different, and amazing are three words I've always used to describe my daughter. From the minute she was born, she was amazing in many ways. She was born at 33 weeks and the doctors were well prepared for the worst; instead, she was fine, breathing on her own and all, ready to be discharged the next day, but we had to stay because I had one of the worst cases of toxemia that they had seen in 10 years, or so they said.

From that day forward, she became a fighter; helped me become the person I am today. She has the gift to lead by example and transfers her strength to others in a very unique way, one that cannot be explained. She has always been an amazing daughter, sister, and friend.

When Gio was born, she showed me how strong and stubborn she is, she held him close and tight to her heart, the feeling of seeing that little boy is unexplainable. After the doctors checked him and confirmed his health, I felt such relief mainly because I've always wanted a struggle free life for her; the thought of something being "wrong" with him never left my heart. I don't know if it's a grandma sense or what. I could see how happy she was with her little boy and as the days went by, that feeling became stronger and stronger; I wanted to forget about it and get it out of my heart, but I couldn't. I'd give her gentle hints (or I thought I did) about asking the doctor why this or that. It was primarily his growth or lack of that concerned me the most, only because I've spent my whole life working with kids and I know how important that is for their development.

It was the summer after he turned a year old I decided to go with her and push doctors to find what was wrong with Gio - I'm not sure I'm happy with that decision now because what you don't know doesn't hurt you! We went to weekly weighing appointments and I tracked his weight very closely. After the third week, I was extremely frustrated and expressed that frustration loudly because that was not giving us answers. I remember Karla saying that I was rude and almost embarrassed her when the doctor walked out of the room, but then thanked me at the end of the appointment because we got a referral to the endocrinologist. I felt we were one step closer to figuring out this mystery.

We attended this appointment together a few weeks later. All his thyroid test results were within the normal range. The only other suggestion was to run a genetics test. When I heard those words, I left the room. I fell apart, I went for a walk and cried for a while. I knew Karla needed me by her side, but I fell apart and have always known that I need to be strong for her. From that day until the test, I prayed to God for strength to accept whatever He had prepared for us. The day of the test came and I took Gio to such appointment. The doctor told me Gio looked different from the previous time he had seen him, but he wanted to run the test just to be certain. I asked him if he was thinking Gio was Down Syndrome and his response was "Oh no! Not Down syndrome!" I felt relieved and left that Appointment with such joy; however, that feeling that something wasn't right didn't leave my heart.

Three weeks later I get a voice message from Karla saying the doctor called and confirmed the Down Syndrome diagnosis! Being in the middle of teaching, I asked the kids to read silently while I called her back, I couldn't wait any longer! Yes, my deep feeling was confirmed. I felt my world was falling apart, not because Gio has Down syndrome, but because working with kids with disabilities for over 15 years taught me how challenging life can be for both parents and the child. I asked my principal if I could leave for a few minutes to go hug my baby. She needed her mommy, but I think that hug was more for me that it was for her. I wanted to go home immediately and hug him tight! I had parent teacher conferences that day and didn't get home until 8, Karla told me she was proceeding with her normal routine and I decided to simply wait, his diagnosis was not going to change what I did for him or how I felt about him, it was simply going to help me do things a little different now.

Gio is very special, not because he has Down syndrome, but because he carries a special charisma in him. There have been many times when they come over and the tension in my house is very obvious between my son (his uncle and godfather) and I, but Gio has the gift to break such tension and change his mood almost miraculously! Gio has a touch that alleviates any stress or pain; his smile first thing in the morning is the best way to start the day, his kisses are so intense I can feel them even days after he's given them to me. He is extremely smart and senses dislike and love from those around him and figures out a way to make sure he is likable by every one.

My baby is very special, not because he Has Down syndrome, but because he is my grandson, because he gives my daughter strength to fight for a better day tomorrow. Gio is my life! I'm learning with him, he's teaching me how to make his life a better one for those around him; Gio is..... I can't find the words to explain what or how I feel for him! He is part of who I am and I'd like to remind every one that Gio is first, then his disability! Gio is not Down syndrome, he HAS Down syndrome and that does not change who he is. Gio should and will always be FIRST!

Wednesday, August 7, 2013

Moving forward

Gio has been doing so well! His imitation is amazing, and that is what is helping him learn. He doesn't say the words exact, but he tries to. You can compare it to a one year old or so when they are first learning to talk. It also sounds like he has a lisp, but it could just be from starting to learn to say the different sounds of words. For thank you he says atu, for gracias he says athiath, he's also getting really good at saying no. He kind of counts up to ten in spanish. He counts uno , toth, treth, ato, iko, sei, ete, cho, dieth, dieth! He skips nueve it might still be too complicated for him. He still says mas, ma, pa, teta, pease, and he learned to say leche, but says eche. Gio also signs still and he has learned juice and is doing it very frequently. I am focusing on teaching him mostly Spanish first because although we are in America and English is the language of America, I don't want my son to lose his language. He will learn English in school anyhow and Spanish is not a guarantee unless our family and I teach it. My goal is to get him in a bilingual pre-school this October. Its bittersweet. I was hoping he wouldn't go to school until kindergarten, but I understand this is best. He is so independent and everyone around him as noticed how much he has matured. His speech therapist says she cannot get over how much he has grown mentally and physically. He has gained FOUR pounds since his surgery!!! It's been such a blessing to get things in order for him to keep progressing. He is so smart. He is babbling more, too, which means his communication skills are getting better. He is such a silly kid and loves teasing people and making people laugh, well the people in his inner circle. He still isn't too social, but hopefully preschool will change that.

Monday, July 29, 2013

Ignorance is Bliss

The actual definition of ignorance is to be uneducated, uninformed, or unaware. There are differences between people who are unaware and acknowledge it, and those who willfully don't care to learn. It actually breaks my heart when people talk, especially celebrities whose music I like, are so ignorant. They are so influential and have such large crowds of people following their example, listening to their every word and watching their every step, that it's sad when they don't realize what they do or say. Yes we are all human and make mistakes, but they should be a little less ignorant than us, since they are role models to a lot of the younger generations. I recently learned of how J. Cole and Drake collaborated on a freestyle called the "Jodeci Freestyle" and in a way insulted those with disabilities. The lyrics says ""I'm artistic, you n---as is autistic, retarded." Ok, I get it we use retarded a lot in a way to say dumb, just like we use gay, but it's really hurtful. A lot of people don't care who they are hurting. I'm guilty of using these words at times also I can't say I never do, but for someone so influential to publicly say a line like this only adds to the ignorance of the younger generation. Not only does J. Cole use the word retarded, he specifies it to autistic, which is the part that makes me more upset. Why are you comparing the people who you claim to be lower in intelligence or status to autistic people? There are PLENTY of autistic people who are extremely talented and intelligent and in my eyes are higher in status than these celebrities because they have faced adversities that are uncontrollable and aren't fixed with getting rich. They may have started from the bottom, but those with disabilities, most of the time thanks to comments like these, can't go anywhere without feeling like they're at the bottom. I think it's great that they wrote out very sympathetic apologies for those they offended, but seriously think before you act. A song, even a freestyle doesn't come out over night. Someone should have said something before it dropped. I don't hate them and I'm not going to boycott their music or encourage anyone to do so. Just asking to raise awareness, the younger generations are going down the drain and it'll be our fault for being ignorant about these things. Ignorance is bliss when it comes to our children with disabilities because they aren't aware of how those on the outside see them, they aren't informed about the cruel things people say behind their backs or the whispers they don't fully hear while walking by. Until they know the truth of what some people say or think about them, they are blessed with ignorance, while others spread their ignorance like a wildfire that can ruin lives.


So I 've been reading about how studies on Down Syndrome have brought along a "cure." I'm not sure if cure is the right term because Down Syndrome isn't a disease, it isn't contagious, and it doesn't necessarily go away. There are treatments for health problems that come along with DS, but it in itself is cause by having an extra chromosome which is part of your genes, which is a little more complicated than taking 1.25 mg of tylenol for cold symptoms. So reseachers have found that a gene called the XIST gene can be placed over the extra 21 chromosome to "silence" it making a person who has DS "normal." Now in my opinion, this would be more helpful for unborn children. For the mothers who hear that their child has a high possibility of being born with DS and instead of aborting their child (which to me is a pathetic way out) they have a solution. I understand that there are mothers who feel they are sparing their child the pain of countless treatments for health issues they may face, and the pain of having inconsiderate people bully them because of their physical appearance as well as their lower IQ for those with severe DS. I understand the parents that have children who have heart defects and thyroid problems and even early leukemia because of the extra chromosome and to them this is an answer to all there prayers. If my son had severe DS I would probably really consider and I probably would have called my doctor and asked if they heard anything about this "cure." The one I have a little bit of confusion with is the parents' idea that it will change their child. They believe life or God or whatever has given them a child with disabilities to better themselves and be the change the world needs. I'm sure having a child with disabilities definitely changes your perspective on life and makes you in a sense a nicer person, BUT you would use that reasoning to not help your child the way they have helped you? To each their own I suppose.

Gio's situation is a little more complicated than that even. He has Mosaicism. We don't even know where he has the extra chromosome, that alone would take months to find out because they would have to test each and every part of him. Which could mean endless blood tests, too many needles and pokes to even consider it being worth it. He only has 22% so to me it's better for him to avoid this "cure." The research has only proven to help IQ and certain health problems. It might help prevent early Leukemia and early Alzheimer's. It might help with the thyroid problems and heart problems and hearing and vision problems. The heart defects are more likely not as easily repaired with a silenced chromosome, as well as the physical characteristics. My son so far hasn't had anything major. The removal of his tonsils and adenoids has helped his weight gain in such an amazing way. Hes getting a little to heavy to carry only because I'm use to him being small. This cure wouldn't help Gio talk any sooner it doesn't improve these delays. It wouldn't help the discreet physical characteristics disappear. His muscle tone wouldn't magically improve over night and the bones on his feet wont miraculously go into place. He learns everything so quickly and is great at imitating. Yes, he might not be where a "normal" 2 almost 3 year old is at, but he is not dumb. I don't see him having a problem where his IQ is concerned. It really irritates me that people assume just because he has DS he is dumb and they assume that because he is so smart he can't possibly have DS. The DS doesn't define a child or even say anything about who they will become. The parents and people around them define that and decide whether it's about the child or the DS. My son is an amazing person so sweet and funny, I'm sure with or without Mosaicism he would be exactly who he is. It is merely a medical term. The research found is great in the sense that there will be a lower percentage rate of women who choose abortion after learning their child may have a disability. It eventually may help someone who is having a lot of health problems as in heart surgeries and blood transfusions from the early Leukemia. This may lead to something great, but for now I will cherish my son for exactly who he is, and if I were to have another child and they have full DS I will love them just as much, not because of the DS or whatever disability they may have, but because they are apart of ME.

Fun Fact I learned!
You guys can google this if you'd like, or don't believe me. While reading about all this "cure" research I found out that the extra 21 chromosome has actually been proven, in some studies, to protect the body from many cancers. A person with the extra chromosome has less than a ten percent chance (approximately) in getting cancer! It is rare for a person with Down Syndrome to get cancer. I'm not exactly sure how it works, but it has been studied that the extra chromosome acts as a protectant and it has something to do with the metabolism it creates or something like that, I'm not a doctor I couldn't understand all the terms, but I want to look into it and I will update this (:

Saturday, July 13, 2013

Welcome to Holland


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Friday, July 12, 2013

My baby's creed (down syndrome creed)

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

-author unknown (if anyone knows the author let me know!)

Wednesday, July 10, 2013

Pointless arguments

I know I might be faced with people who ask rude questions or say ignorant things. I've already had a couple and it's only been 5 months since we found out. I have a coworker who is probably my biggest annoyance at times with these things. He doesn't mean to be hurtful, he's almost just to stuck in his perfect little world to realize that some people don't have unrealistic lives. I don't mean to write specifically about him to hate on him or to get people to hate him. I want to share because it's real. He is not alone in the way he thinks. He's a very kind person and has actually been super nice to my son the times he's seen him.
The first time he met my son it was at a work dinner for a couple employees that were going away. I still hadn't known about my son's condition, but it was obvious my son was delayed. He didn't talk (still doesn't) and he scribbled and threw things like a baby. He was already two and my coworker who has nieces and nephews of around the same age asked why he didn't talk, why he made his lips the way he did, why he didn't really pay attention. I had been use to these kinds of questions because they were questions I asked myself, but I brushed it off and I told him staight up that my son was slower and it happens. Obviously my tone was a little more on the rude side, but I didn't have answers and that frustrated me more than the questions.
When I got my diagnosis, I was at work and only my boss knew about it, but he hinted to the other members of our team that I was having medical issues with my son and to give me some space. Of course eventually they asked if he was ok and if there was anything they could do. I think they imagined much worse, but I finally just told them my son had Down Syndrome, I felt it easier than explaining the percentage and wanted to avoid the how and why questions. For the most part they have been very considerate and whenever my son comes around they play with him and give him suckers. My coworker who is a teller with me is the one who is more outgoing, I guess you can say, with the comments he makes and questions he asks.
The most recent conversation we've had started when a customer of ours came in with his daughter. He was an older gentleman, probably in his late 40's or early 50's, and he told us his daughter was 6. My coworker laughed and joked on how she could be his granddaughter, something I'm sure he's heard a lot before because he just smirked and tried to hurry with the transaction. After the customer left, my coworker said, "I wonder why that little girl wasn't born with Down Syndrome, because that guy was pretty old so his wife must've been older too when they had her." I was kind of stunned by his comment. I asked him why he would wonder that and he said because he's heard that the risk of a child being born with Down Syndrome is higher for older women. I told him my mom had my sister in her late 30's and my sister was fine. He said either way he wouldn't want to take that risk. I asked what risk would he be taking. He said he wouldn't want his wife to get pregnant at an older age because he wouldn't be able to handle a child who would never be able to take care of themselves. He wouldn't want a child with Down Syndrome because it would be too much work and it's like having a child for the rest of your life, according to him. I told him it doesn't matter what age you are if you're meant to have a child with a disability it will happen. I told him I was 19 when I had my son and according to tests I had almost no chance of having a child with a disability, which I did. He started going on about how either way he wouldn't want that on his shoulders. I was just shocked at how dumb he is on the subject. How much ignorance a person could expose in less than 15 minutes. I'm sure he is not alone in his theories and it's sad to think people are this naive about myths. I know I wasn't fully educated on raising a child with a disability, but I also wasn't so against it. I wasn't always concerned about having a child who would be a little extra work. I was always willing to accept my child with a disability, which is what I had told my parents when I took that test when I was pregnant. Yes, it was a relief at the time that I had gotten a slim chance, but even now it doesn't change what I would do for my son. It's actually kind of funny to hear some of the things people, like my coworker, have to say. Sometimes it'll hurt my feelings and I'll be rude about people's comments, but I'm starting to just let it go. It's easier to sit back and smile because at the end of the day, my son is happy with what he's got.

Wednesday, July 3, 2013

Siblings at heart.

I had mentioned before how I helped a lot when my little sister was born. I was fifteen when she was born. When we would go out people always assumed she was mine. One time when we were at a museum in Mexico City one of the ladies there commented to my mom how beautiful her granddaughter was. My mom, of course, was offended and said she was too young to be a grandmother and that both girls were her daughters. The lady laughed and said it was alright, there was no shame in being a young grandmother. My mom was still not very happy, but decided not to argue. I don't know if it's the way I was with my sister because I have always kind of seen her as my daughter. I would wake up in the middle of the night to help my mom with her when she went back to work. My mom kept breastfeeding even after she started working, so I would give my sister the bottles with breastmilk, but she wouldn't take them from anyone else only me, I'm sure it's because it felt more real. I taught my sister her body parts and I helped her when she started walking. I took care of her everyday after school. There were times, when I started basketball and soccer, that I would take her and my brother with me to my practices. I feel like I was a second mother figure to my brother and sister. My brother will tell people the same thing, sometimes. I'm not sure how my sister feels about me now that I have my son, but I feel like I still do whatever I can for them. When I got pregnant, my brother wasn't too excited, but my sister was very, very happy and proud to say she was going to be an aunty. I moved out from my dad's so I didn't see them as much. For my baby showers, my sister kept telling everyone how Baby Gio was going to call her aunty and she was only going to be 4. She asked all sorts of questions like would he talk, who was he going to look like, was he going to play with her, would he cry a lot, what was going to be his favorite food, and the biggest one how did he get in my tummy. She made up a story about how Baby Gio was a little tiny seed and he ran around and then I grabbed him and ate him and now he was growing in my tummy. As my due date got closer she asked how he was going to come out. My mom told her I was going to poop him out and she just looked at me with a really grossed out look asking, "Is that true?" We laughed and my mom said she was just kidding that a doctor was going to take him out, but he would have to open me up. My sister was satisfied with that answer. When she first visited me at the hospital she could not believe her eyes. There was a real baby laying in the little bed and my stomach was no longer big, or well as big. She wanted to carry him, but my mom said he was too delicate so she needed to help her. She didn't want to let him go. My brother was actually pretty in love with Baby Gio too. To this day I think Baby Gio is the only person in this entire world to make my brother's eyes light up. It's beautiful. My sister didn't exactly understand what it meant for Baby Gio to have Down Syndrome. She says he's really smart and always takes her toys like a normal baby would. I love her simplicity. When I told her Baby Gio had to learn sign language, she thought it was the coolest thing ever. She's the one who pressures him to use his sign language. She's also the only one he listens to, most of the time. When she asks him to sit and eat, he listens. He gets so happy when she comes over and he gets all hyper. Their relationship is amazing. They're growing up together and she watches over him the way I watched over my brother. She cares for him and does everything to make him happy. When we are all out together my sister likes to say how people think they are both my children, but that she's his aunty. I'm sure it's cooler to be an aunt than a big sister. It made my sister grow up a lot, but we try to make sure she realizes she's still a kid. It also amazes me how much she understands about him. In a way she's the only other person besides me that really gets him. We understand how he feels and why he does certain things. Her patience with him is remarkable. I'm excited to see them grow up together, like siblings.

Monday, July 1, 2013

The beauty of love.

I saw this video last week and I can't get over it. It's so beautiful. It really touched me and I thought I would share it. It's nice to know that some famous people are doing good things with their money.

A little knowledge doesn't hurt.

There have been a lot of misconceptions about Gio because of his diagnosis. I know people aren't trying to be rude or ignorant either. Most people just don't know. I didn't know until I started doing research on it. I would have been one of those people asking weird questions because of what we think we know about Down Syndrome.

First off, I've noticed a lot of people say it "Down's Syndrome," just like I use to too. It actually isn't "Down's" it's just Down Syndrome. I'm not exactly sure where the other way of spelling it started.

Most people think that Down Syndrome is a rare disorder all together, but it isn't. An estimated 1 in every 700 babies are born with it. Around 350,000 people in the US alone have Down Syndrome right now. The only thing with Gio is the kind of Down Syndrome he has is rare, but Down Syndrome in general isn't.

Common thought is that only older women have children with Down Syndrome. Although your chances increase with age, it is more common among younger moms to have a child with Down Syndrome. The average age of mothers who have children with Down Syndrome is 28. I think that's why a lot of people think it's weird that Gio has Down Syndrome. I had him at 19, which caused a lot of skeptical comments.

Down Syndrome is not "curable." I think this is actually a little funny. Down Syndrome is not a disease, it isn't contagious, and you can't take medicine for it to go away. It is a genetic disorder which makes your body act a little different. There are medical conditions that are caused by it, which there are treatements for, but it alone is not a disease.

When you hear "Down Syndrome" you automatically think of a person with severe mental disabilities or mental retardation. You think of a person with a certain facial structure, and honestly you think of a person who talks funny and is dumb. This is not true at all. The assumption is that, because of the disability, people with Down Syndrome can only learn so much, but they can learn as much as you teach them. Some things may take longer, but they can learn it. They can hold jobs and they can be in "regular" classrooms. This is what I think scared our families the most about Gio having Down Syndrome. It sounds rude, but they thought it was a total lie because Gio isn't dumb. Neither are the majority of people with Down Syndrome. A lot of "normal" kids are not very smart either.

One of the questions I have heard is if Gio will ever marry. His dad even commented on how now I'll have Gio with me forever. Every mom wishes their kids don't grow up, but it isn't really what we want. We want to know we raised them well enough to be on their own and make a life for themselves. People with Down Syndrome get married and have children, this will especially apply to Gio since his diagnosis isn't severe, but even if it was he would still be able to make his own life.

I've kept hearing people say, "Well atleast that means he'll always be happy." WRONG. Now, I'm not saying that Gio isn't a happy child, he is as long as he is in his comfort zone. It sounds weird or maybe funny, but that's how it is. I finally got to be at a family party past 10 p.m. and it was all because I brought his Looney Tunes movie with us. It was easier to put it on for him to because we were at his grandma's house too (:. If we would have been at any other house he would have wanted me to stay there and watch it with him. Usually around 9 or 10 p.m. he has to be watching his movie. He throws huge fits when people try to hold him. He doesn't like being played with at certain times. He hates being in crowded places, besides the stores, I think it's because we are moving around, but even then we can't stay for long. He hates when I sit him down to eat. He doesn't like wearing new shoes for the first time. He has an attitude, and is a huge momma's boy. He's very sensitive too. So if Gio, who only has 22% Down Syndrome has a huge range of emotions it's safe to say anyone with Down Syndrome feels everything, not just happiness. It's just a much more simple lifestyle. We could learn from it. They don't care about brands or expensive things. They like what they like and that's all they need to be happy. Gio loves Looney Tunes, for example. A three hour long movie with episodes of all the different Looney Tunes characters makes Gio's day.

Sunday, June 23, 2013

Not a teen, not an adult.

So when I found out I was pregnant, I had had an idea for a while already, but was in total denial. I had a weird period cause I sucked at taking the pill, which according to me, was why I wasn't getting a period. But one day I got extremely angry at my dad because I claimed he never bought me the fruit I wanted. I yelled at him all the way to the store, my poor dad. You know what I made him buy me? Grapes and cucumbers. Cucumbers aren't even fruit. He asked me if I was ok because that was a stupid thing to get mad about. Sorry pa, my hormones were a little wild.
I think it was the end of April when I went to Walgreens to buy a pregnancy test just to have a solid answer. I bought it, drove to 7/11, peed on the stick and waited for five minutes. I texted my boyfriend, at the time, to let him know what was going on. It didn't take five minutes at all. I saw the life changing symbol in the little box within seconds. I took the second test; same result. I cried. I told him both were positive. He asked me what should we do? I knew I wanted to keep it, yes we were only 19, but I couldn't go threw with anything else. My dad found out through Facebook; sadly I did not have the courage to tell him myself. I told my mom and she told me to think very hard about what I was going to decide. My boyfriend took me to my first appointment and I was twelve weeks. I missed my whole first trimester. We both got jobs and he talked about me moving in with him. All guys, I think, have their little scares and that moment where they don't know if they can be dads. My baby dad's lasted a week, but by the end of the week I was moving in with him. My pregnancy was typical for that of a young mom. You get the weird stares, the baby dad questions, did I finish school, etc. In June, I had the option of taking some test to see if my son would be born with a genetic disability. My parents were very against because my mom had gotten a very high chance of my brother having Down syndrome and it caused her to be extremely depressed the rest of her pregnancy. My brother actually was born "normal." I took it because I wanted to be able to prepare myself for anything, of course nothing would change the love I had for my little blessing. I actually had one of the lower scores, which meant it was VERY unlikely, as the nurse kept emphasizing, that my son would have any issues. Ironic isn't it? To me those results now mean nothing. When I have another child I'll probably pass on those tests. God has the final say in what happens. My labor was long, approximately 22 hours. The nurses thought I was funny because I laughed after every contraction. I guess I just loved the fact that my baby boy was almost out. Once my water broke, I started dialating rapidly. At 8 or 9 pm I was at 9cm so they suggested I take the epidural. I didn't want it, but what they hadn't told me up until then was that during my recent contractions my son's heartbeat was close to a stop. I was too tense and he seemed to be stuck. So I took the epidural and I had to lay on my left side. I felt everything on my right side, but I still got to take a nap. Next thing I know, nurses are rushing into my room waking me up at 2am announcing "Its time to push." So my dad and my baby's dad are each on one side; my mom and his mom are each holding one foot. I push for about ten minutes and they flop my bloody child onto my belly at exactly 2:15 am on October 30. They tell me to rub him hard on his back because he's having a hard time catching his breath. He's frantically searching for my boob, I put him on and he feeds like he had been doing it forever. The nurses and doctor were very impressed. His dad gave him his first bath and changed his first diaper. I ate a sandwich and I don't remember a lot after, but I was told I was rushed into another room because I started loosing a lot of blood. I think I passed out because the next time I woke up, it was to the cry of my beautiful 18 in., 6lb baby, named Roberto Giovahnii. My dad was very proud of me, he said I delivered better than any of my relatives including my mom, as though this was what I was meant to do. But at 19, I was still terrified at how disgusting my body was and all that was to come my way. As terrified as I was, I think it was good I didn't know about my son's disability just yet.

Learning all over.

I think I'll start with when all the crazy doctor's appointments started. When my son turned a year old we had to switch him to milk as you do with all one year olds. The doctor I had been taking him to at the time suggested I withdraw the whole milk completely from his diet, because the first few times I had given him whole milk he had to be taken to the emergency room. He had had a very bloody diaper and I panicked. The nurse said it was normal for that to happen since his body was getting use to the heaviness of the whole milk. She referred me to a doctor. I didn't like this doctor at all. She weighed him only in his first visit and every visit after that she tried giving him antibiotics for illnesses he did not have. My son had large tonsils making him sound like he had a cold all the time, which is what she was misdiagnosing. A friend then recommended the pediatrics she takes her son to. I took him in as soon as I could. They said he was very underweight; by this time he was already a year and a half. He was also behind mentally compared to most kids his age. He still wasn't walking at 18 months which was a little bit of a concern to the doctors. My theory was that he was lazy because we all held him all day at home. So they referred me to Child Find, an organization that helps children under 3 who are struggling with different areas of development. In my son's case they suggested a physical and speech therapist would help him get back on track. This whole time I felt like a horrible mother. I had been so stuck on working that I wasn't teaching my son anything and now he was behind. I did all I could to help him "catch up." I started reading to him, I only let him watch shows I thought were educational, I repeated animal sounds and body parts so much I dreamed about it. I had no life, I felt, because I was only 21 and did nothing, but work on my child's development. We had our first session with the physical therapist in June of 2012. She would stand him up and help him take some steps and let go. He wasn't having it at all. He was 20 months and displayed no sign of trying to walk. The therapist decided to see him every two weeks. To our surprise, though, he started walking before his third session! We all laughed at her expression when we answered the door and he ran to see who it was. She stayed maybe 15 minutes to fill out paperwork that she felt he no longer needed her services and congratulated us on whatever it was we were doing. Now, his speech therapist didn't see such quick improvement from him. In fact, he still receives speech therapy to this day. During all of these crazy therapies that were happening every other week, he was getting weekly weight checks, because of how small he was. I had to keep journals on his diet and was sent packets on high calorie meals he should be eating. He had blood work done, I think, once a month for the three months before he was sent to an endocrinologist. None of the doctors could figure out why he wouldn't gain weight. I'm surprised they didn't call social services on me, the nurses gave me the weirdest looks as if I didn't feed my child or something. I went to this specialist who looked at my son and asked if I had ever had him tested for Down Syndrome or any other genetic disability. Of course I hadn't! My son couldn't have Down Syndrome. He had a slightly bigger forehead, but so did his father. He stuck his tongue out on occassion, but that was a habit he got from when he was teething. He was small because I was small. I had all my theories and explanations about everything anyone ever pointed out. His first visit was short, a simple introduction to what was going to happen with in the next year. This was in November of 2012. My son had just turned two, was walking, talked a tiny bit and loved cars and guns like any other little boy. I had just started a new job that had a 9-5 schedule so I could spend more time with him, while making a little more money. Things were looking good. Come February of this year, he had his second visit with the endocrinologist. He commented on how mature my son looked and that the Down Syndrome he had seen before was not quite as noticeable, but he still wasn't growing. He said he wanted a genetics test done to rule anything else out, before starting hormones. The thought of giving my son hormones scared me, but I figured it could be worse and this would help him out a lot. I also felt it would be a huge weight lifted off of my shoulders. The past year had been so crazy and stressful. I knew being a first time mom and being so young was hard enough, but I couldn't have messed up that bad during his first couple years of life. A couple weeks after that relieving appointment in February, I get a phone call at my job. The doctor had the results to my son's genetic test and needed to give them to me immediately. My heart dropped because I know when things are good they just leave a message and leave you alone. He said my son had Down Syndrome just as he had suspected. The odd part was that it wasn't in all of his genetic makeup, it was only parts of him that he could see. He explained that he has never seen anyone with it, but only heard of it. The name of it is Mosaic Down Syndrome. I pretty much couldn't hear the rest of whatever he was saying. I was so sad and hurt and I felt disappointed in myself for being so ignorant and in denial. I could have caught this sooner, although I did hear him say at the end that I was lucky to have caught it this early. I cried and I was at work and I felt so pathetic. I called my mom to tell her what happened and I could hear her crying on the other end. She asked if I was ok and I said yes. I also sent a text to my baby's father and my best friend, they were just as shocked, but said they always suspected something.  I was working in the back room so I had a moment to get myself together. Soon my mom came to my job and just looked at me her eyes red and swollen, full of tears. She just hugged me very tight. The type of hug that you know are more for them than for you. She felt the pain as a grandmother and as a mother. She just stared at me with her round, sad eyes. She told me to let her know when I was home; she wanted to see the baby. Right after she had left, my boss came and looked at me and asked what happened. I told him nothing that it was just my son's doctor and I was ok. He kept asking if I was sure like trying to get it all out of me. I said yes I'm fine, my son has Down Syndrome, but it's ok. He just looked at me and said, "it's ok to cry Karla."
"No, no I'm fine. I don't need to cry."
"I know you're strong, but you can let it out. I know it's hard."
"I know it's ok to let it out, but I don't have anything to let out. My son has Down Syndrome it's going to be ok. Hes still my son." But by this I'm already tearing up with a big, ole frog in my throat ready to just burst out in tears. Which I do. Only for about 10 seconds, because I'm not use to crying in front of people so when it happens it's very sudden and very quick; I don't know why. I always thought I would know a little bit about being a mom, since I helped my mom with my sister when I was 16 years old. I tried telling myself it wouldn't be much different when I found out I was pregnant. Little did I know I would be facing a different type of motherhood. A more special type of motherhood.